Ok first let me apologize for a late post today I'm sorry. We have had a rough couple days with Mav meltdowns, screaming, just not a happy camper and seriously not fun for me either. We will get through it and have a good spring break.
SO on with the Straight Up Sunday stuff...
After reading the above your probably wondering what I mean when I say meltdown.. Mav's meltdowns go something like this he gets upset or mad over almost anything or nothing, he throws himself down, kicks, screams, crys and most of the time you have no clue why. He can get physical too with grabbing, hitting, or sometimes worse.
What do we do when this happens? We try to figure out what's going on, change the situation, redirect him,talk to him, sometimes we use this wrap holding thing kinda like a big hug that the behavioral specialist advised us to use, we try to do the time away thing too. Sometimes things help sometimes they don't. For example yesterday we were out in about we had to go to the big city of Grand Rapids and make a stop at a small mall so Louis could get license plate tags so I took the 3 kids to JoAnns (they have carts woot) put Mav in the cart got all done looking he was screaming and wanting dad we had looks finally dad got back but still not a happy Dude. We leave he screams and instead of getting upset and trying some technique or discipline I walked briskly and talked to him as he screamed after a minute he got it and it was over.then it started again in the car ahh but we got through it. Today he's just not happy not sure what's going on so I plan to call the Dr to see if maybe we need to change meds or something.
Yes life is not always peaches and cream but it's life. I try to be upbeat and positive sometimes it gets so hard but we always get through it one way or another. This is life, this is part of our journey. It's not always like this thank goodness. Mav is a true blessing to us all and he has changed our lives for the better!
ok on to another question.
Is Mav potty trained? NO he is not this is one thing that we have always said we can deal with we are working hard on everything else and this is something that really has to just come to him not like we can make him go on the toilet when he really doesn't know what is going on down there. Yes diapers for him are expensive and we go through alot so we are have found a wonderful lady named Carolyn from Grand Rapids who has designed some cloth diapers for Mav which will be using this summer and on the weekends here at home. He really likes them and hopefully it will help towards the potty training thing too. You can visit Carolyn's Etsy shop HERE Awesome stuff!
Sleeping Habits
Mav was going on very little sleep I'm talking like a few hours a week and it was killing me so we talked to the Dr about it and Mav was put on medication to help his moods and help him sleep at night. It goes in spurt where it's been decreased then increased, it works then it doesn't work. Right now I think were going through another one of those times where its not working and he is needing something different actually at the last Behavioral specialist appointment he wanted to switch Mav's meds because he is chunky and should probably try something different for his moods and sleep I choose not to at the time and have been really been paying more attention to his weight and breathing lately and I'm actually getting scared about it so that is another reason I will be calling the DR and saying that I guess I'm ready for the med change now.
What does Mav like?
Mav goes in spurts of what he plays with, watches, and likes. As of a few weeks ago Thomas the Tank Engine and Friends have made a comeback there for awhile he didn't play with them now we take them everywhere I'm making Mav a Man purse to carry his goods in. He is into computer games the learning kind but gets frustrated easily with them most of the time. He isn't int his movies as much anymore he use to love watching them but now we watch about 20 minutes of each movie then it's on to the next which drives everyone crazy but he likes it. He loves Boomerang on the satellite which is kinda weird since most kids love the new cartoons Mav loves the oldies.
Is Mav on a diet? Does he eat certain foods?
Mav is not on a diet unless you count the picky eater Mav Diet which consists mostly of bread products. He hates noodles! they don't come in his space or he flips out. We try to get him to try new foods which usually results in a real throw down meltdown which is not good for him or us. We have tried the Gluten Free Diet but we didn't get the results other have with it and it was way harder he was cut down to nothing and for a kid that bases his intake mostly on bread stuff um that diet just doesn't work. We gave it 6-8 months to see how he did on it so it wasn't like we tried it for a day or two. I do know that the diet does work for some kids it just wasn't right for him.
Health?What kinds of Dr's does Mav see?
I would say Mav is pretty healthy he does have problems with his legs, feet, and nervous system. Mav sees a Behavioral specialist,Pediatric Neurologist, Pediatric Orthopedist, and of course his Pediatrician. He has been given multiple diagnoses he has a cavus feet and metatarsus adductus ( foot deformities), charcot marie tooth(nervous system disease), and a disease in his foot which causes the blood to be cut off from the bone making the bone harden before it should. We have been given other diagnosis too but these are the ones that the DR is concerned with and focusing on right now. Mav goes to the orthopedic DR on the 15th this month to see what is going to happen next and when he will have surgery on his feet. We have been told that he needs surgery on his feet where the DR will break the bones in both feet and reconstruct the feet. This surgery will need to be done multiple times its is very very scary more poor little Dude going through all that.
When Mav does get sick with the normal stuff like the rest of us it seems like it hits him alot harder and it takes him longer to get over it.
Mav has alot of sensory issues which is why he has problems with foods, noises, touch, movement etc.If you google sensory processing problems/issues it will give you an idea of what I am talking about. Mav is both hyper and hypo sensitive to most things on the checklist which baffles us all because usually kids are one or the other.
ok I think i have wrote enough for today.Reading this I hope you don't think this is negative or sound like I'm dwelling on the bad stuff because I don't I'm just trying to show you the REAL life stuff too.Mav is a blessing to us!Thank you for your support! I really appreciate the visitors and the comments you all are wonderful!!! I Will be posting another post something like this next Sunday hoping it will be Louis' thoughts or maybe Teagan's. Thank you for reading this!
~Mav's Momma
SO on with the Straight Up Sunday stuff...
After reading the above your probably wondering what I mean when I say meltdown.. Mav's meltdowns go something like this he gets upset or mad over almost anything or nothing, he throws himself down, kicks, screams, crys and most of the time you have no clue why. He can get physical too with grabbing, hitting, or sometimes worse.
What do we do when this happens? We try to figure out what's going on, change the situation, redirect him,talk to him, sometimes we use this wrap holding thing kinda like a big hug that the behavioral specialist advised us to use, we try to do the time away thing too. Sometimes things help sometimes they don't. For example yesterday we were out in about we had to go to the big city of Grand Rapids and make a stop at a small mall so Louis could get license plate tags so I took the 3 kids to JoAnns (they have carts woot) put Mav in the cart got all done looking he was screaming and wanting dad we had looks finally dad got back but still not a happy Dude. We leave he screams and instead of getting upset and trying some technique or discipline I walked briskly and talked to him as he screamed after a minute he got it and it was over.then it started again in the car ahh but we got through it. Today he's just not happy not sure what's going on so I plan to call the Dr to see if maybe we need to change meds or something.
Yes life is not always peaches and cream but it's life. I try to be upbeat and positive sometimes it gets so hard but we always get through it one way or another. This is life, this is part of our journey. It's not always like this thank goodness. Mav is a true blessing to us all and he has changed our lives for the better!
ok on to another question.
Is Mav potty trained? NO he is not this is one thing that we have always said we can deal with we are working hard on everything else and this is something that really has to just come to him not like we can make him go on the toilet when he really doesn't know what is going on down there. Yes diapers for him are expensive and we go through alot so we are have found a wonderful lady named Carolyn from Grand Rapids who has designed some cloth diapers for Mav which will be using this summer and on the weekends here at home. He really likes them and hopefully it will help towards the potty training thing too. You can visit Carolyn's Etsy shop HERE Awesome stuff!
Sleeping Habits
Mav was going on very little sleep I'm talking like a few hours a week and it was killing me so we talked to the Dr about it and Mav was put on medication to help his moods and help him sleep at night. It goes in spurt where it's been decreased then increased, it works then it doesn't work. Right now I think were going through another one of those times where its not working and he is needing something different actually at the last Behavioral specialist appointment he wanted to switch Mav's meds because he is chunky and should probably try something different for his moods and sleep I choose not to at the time and have been really been paying more attention to his weight and breathing lately and I'm actually getting scared about it so that is another reason I will be calling the DR and saying that I guess I'm ready for the med change now.
What does Mav like?
Mav goes in spurts of what he plays with, watches, and likes. As of a few weeks ago Thomas the Tank Engine and Friends have made a comeback there for awhile he didn't play with them now we take them everywhere I'm making Mav a Man purse to carry his goods in. He is into computer games the learning kind but gets frustrated easily with them most of the time. He isn't int his movies as much anymore he use to love watching them but now we watch about 20 minutes of each movie then it's on to the next which drives everyone crazy but he likes it. He loves Boomerang on the satellite which is kinda weird since most kids love the new cartoons Mav loves the oldies.
Is Mav on a diet? Does he eat certain foods?
Mav is not on a diet unless you count the picky eater Mav Diet which consists mostly of bread products. He hates noodles! they don't come in his space or he flips out. We try to get him to try new foods which usually results in a real throw down meltdown which is not good for him or us. We have tried the Gluten Free Diet but we didn't get the results other have with it and it was way harder he was cut down to nothing and for a kid that bases his intake mostly on bread stuff um that diet just doesn't work. We gave it 6-8 months to see how he did on it so it wasn't like we tried it for a day or two. I do know that the diet does work for some kids it just wasn't right for him.
Health?What kinds of Dr's does Mav see?
I would say Mav is pretty healthy he does have problems with his legs, feet, and nervous system. Mav sees a Behavioral specialist,Pediatric Neurologist, Pediatric Orthopedist, and of course his Pediatrician. He has been given multiple diagnoses he has a cavus feet and metatarsus adductus ( foot deformities), charcot marie tooth(nervous system disease), and a disease in his foot which causes the blood to be cut off from the bone making the bone harden before it should. We have been given other diagnosis too but these are the ones that the DR is concerned with and focusing on right now. Mav goes to the orthopedic DR on the 15th this month to see what is going to happen next and when he will have surgery on his feet. We have been told that he needs surgery on his feet where the DR will break the bones in both feet and reconstruct the feet. This surgery will need to be done multiple times its is very very scary more poor little Dude going through all that.
When Mav does get sick with the normal stuff like the rest of us it seems like it hits him alot harder and it takes him longer to get over it.
Mav has alot of sensory issues which is why he has problems with foods, noises, touch, movement etc.If you google sensory processing problems/issues it will give you an idea of what I am talking about. Mav is both hyper and hypo sensitive to most things on the checklist which baffles us all because usually kids are one or the other.
ok I think i have wrote enough for today.Reading this I hope you don't think this is negative or sound like I'm dwelling on the bad stuff because I don't I'm just trying to show you the REAL life stuff too.Mav is a blessing to us!Thank you for your support! I really appreciate the visitors and the comments you all are wonderful!!! I Will be posting another post something like this next Sunday hoping it will be Louis' thoughts or maybe Teagan's. Thank you for reading this!
~Mav's Momma
1 comment:
Mav sounds like a combination of both of my girls. Jordan (who is 4 and has cerebral palsy) has problems with her feet, her insteps are so collapsed that the inside of her ankles almost touch the floor. They are waiting until she's older to do the surgery. She also has sensory issues, and the same diet the Mav prefers. She also is not completely potty trained. Depending on Mav's insurance, if it's determined to be a result of his diagnosis, insurance may pay for the diapers. (They do for Jordan.)
Alexis (who is 7 and has ADHD and bipolar) has meltdowns, and doesn't sleep at all without medication. She gets manic and can stay up for days.
Big hugs, and I just want to say that I am here if you need to talk. I so get what you mean about there being good times and bad times.
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